29 February marks the 17th International Rare Disease Day. A day dedicated to raising public awareness of these diseases and their impact on the lives of those affected. Under the aegis of Eurordis, the European alliance of patient organisations, thousands of people are getting involved to support the actions and awareness-raising events planned in over 100 countries. In Luxembourg, some buildings and monuments will be illuminated in the "colours of rare diseases". This initiative is part of Luxembourg's efforts to mark this special day.
Rare diseases: facts and figures
A disease is said to be "rare" if it affects less than one person in 2,000. More than 6,000 different rare diseases have been identified, and their onset can occur as early as birth or childhood[1]. In Luxembourg, an estimated 30,000 people are affected by these diseases, with a few isolated cases for certain diseases. Rare diseases are mainly chronic and progressive, often accompanied by motor, sensory or intellectual deficits. The major challenges associated with rare diseases include the phenomenon known as the "diagnostic odyssey" and its wandering, access to appropriate treatments and the need for appropriate medical, healthcare and psycho-social care.
The Ministry of Health and Social Security continues its fight against rare diseases
The first National Plan for Rare Diseases (PNMR), which was implemented between 2018 and 2023, marked a major step towards improving the system of care for rare diseases (equal access to diagnostics, improved overall care for patients, supporting the environment of those affected, etc.). A mapping of rare diseases has been carried out, followed by an orientation guide for people living with a rare disease. Collaboration with the patient association ALAN - Maladies Rares Luxembourg has played a decisive role, particularly in setting up the Infoline Maladies Rares and a national psycho-social coordination service in partnership with the Centre hospitalier du Luxembourg (CHL). At the same time, the National Alliance for Rare Diseases was set up to bring together patient associations. Also noteworthy are the measures taken to prevent rare diseases and the nationwide extension of neonatal screening, with the inclusion of screening for spinal muscular atrophy (SMA) from 2024.
At the end of this first plan, despite the significant advances made by those involved in the NRMP, there is still progress to be made. In fact, following the evaluation of the PNMR published in late 2023, discussions are currently underway to draw up a second National Plan for Rare Diseases.
"On this International Rare Disease Day, we must unite to support and give hope to all those affected by these often unrecognised conditions. Every individual and every family coping with a rare disease is an example of courage and resilience. As Minister, I am committed to promoting research, access to care and awareness so that no one is left behind in this fight against the unknown."
Join the "Global Chain of Lights" action!
As in previous years, the "Global Chain of Lights" action will illuminate iconic public buildings and monuments around the world, including in Luxembourg. A number of prestigious sites will be illuminated in blue, pink, green and purple, including the Gasperich water tower, the Philharmonie, the Belval blast furnaces, the Spuerkeess headquarters, as well as a number of hospitals, town halls and cultural centres.
The official launch of the "Global Chain of Lights" will be given by Martine Deprez, Minister of Health and Social Security, in the presence of the College of Aldermen of the City of Luxembourg, on 28 February 2024 at 7 p.m.
More information on the events organised by ALAN - Maladies Rares Luxembourg to mark International Rare Disease Day is available at https://alan.lu.
[1] Source: Orphanet (https://pubmed.ncbi.nlm.nih.gov/31527858/)
Press release by the Ministry of Health and Social Security